Posted 29 November 2007 - 05:13 PM
I'm new - I've been reading postings for about a week or so. I went to the doctor a few weeks ago because I was so tired all the time, and having a lot of aching joints. She took blood tests. One of them came back 1:1280 positive anti-centromere and another was Centromere b - positive 8. I have an appointment with the reumatologist (can't even spell it yet) December 10. The doctor told me not to read about it on the Internet before my appointment, which, of course, I immediately came home and did, and now I'm scared. I have had various tests - one being the pulmonary whatever it is called and I have mild interstitial lung disease. I've noticed in the past two weeks that my finger pads seem really wrinkly and are sore. Is it normal to have the pads on fingers sore? And so soon? I don't see where my skin seems tight although my fingers are puffy in the middle of the night. Also, does anybody know if just by the anti-centromere they can tell if it's limited or diffused scleroderma?
Thank you so much for any help you can provide. December 10th seems like a thousand years away.
Posted 29 November 2007 - 05:58 PM
The diagnosis is not just made by blood work. It is also made by symptoms. Anti-centromere is usually seen in limited. I had the same thing happen to me about 5 years ago. I had the positive anti-centromere blood work. Your rheumatologist will be able to tell you what is going on. Please try not to get yourself upset ahead of time. Everyone is different and everyone does not have every symptom. You may not even have scleroderma at all. If I can offer any advice, it is to try to see a scleroderma specialist. Also, if you do in fact have scleroderma, remember although it is not curable, the symptoms can be managed. Please feel free to e-mail me privately if you have any questions or if you need to talk. The not knowing and waiting are the hardest part. I wish you the best.
Posted 29 November 2007 - 07:00 PM
Do you have Raynaud's (white fingers with any cold exposure)? That would probably explain the sores on your fingers. I have no skin involvement so far (8 years). Try not to worry too much and see what your doctor says. CREST is a definite life change but I prefer knowing what's wrong.
Posted 29 November 2007 - 07:08 PM
Posted 29 November 2007 - 07:29 PM
Waiting is the hardest thing to do when you are concerned about something. I should know... but do your best. I have appts with a new doctor on the same day that you seem your rheumatologist - so best of luck to the both of us! We can wait and not freak out!!!
Posted 29 November 2007 - 08:09 PM
Welcome! First of all you should know that freaking out is normal, just don't get yourself too worked up. We've all been there. Diagnosis requires a physical exam, blood tests and other tests like ct scans, pulmonary function tests (pft), biopsy and/or x-rays. Your fingers will be examine as part of the physical exam. I have finger issues but nothing relating to wrinkles - but that doesn't necessarily mean much.
My diagnosis after I was passed from doctor to doctor. My 4th doctor diagnosed me finally via physical exam, blood test and x-ray confirmed by ct scan and pft.
EH does bring up something important... be sure your rheumatologist knows a thing or two about scleroderma. Not every rheumatologist is a scleroderma specialist and being evaluated by a specialist may save you from getting the runaround.
You will be okay!
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Posted 29 November 2007 - 09:21 PM
I know it's really hard, but you should just calm down and not worry untill there's actually something sure to worry about. I hope everything will turn out well in your situation, but we're here for you if you need us
Posted 30 November 2007 - 02:41 AM
Welcome to the forums! I know this is a very scary time for you and it is very easy to get your self into a panic. I think we have all done it at one time or another. Please know that if you are diagnosed with scleroderma it is not the end of the world. It has been 15 years since my diagnosis and I am living life. It may be different than I thought it was going to happen, but I am still living. Once you get over the shock it gets easier to deal with. This disease also affects everyone very differently. I know the 10th seems like an eternity but it will be here before you know it. You should be prepared for your visit with questions for your dr. Try not to read too much, but educate yourself enough so when you have your appointment you will understand what is going on.
Please know that we are all here for you!
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Posted 30 November 2007 - 07:33 AM
When I got ot the point you now are... scared... I backed away and digested what I had learned. Of course, I'm sure you know that you're not going to have every disease, so please... take one day at a time and keep posting.
There happen to be so many very knowledgeable folks at this particular forum. We have "been there... done that" and hope that we can temper things a bit for you.
Posted 30 November 2007 - 10:12 AM
Welcome to the Sclero Forums. You've come to the right place for information, support and all around helping you with the freaking out part.
Dec 10th will be here before you know it! Try to relax until then. That's actually pretty quick to get in. I know this is all very overwhelming, but my advice to you is to not worry until there is something to worry about. Easier said than done for sure. Anyway, keep reading posts, ask questions if you think of anyway, and just lead life as normally as you can.
Posted 30 November 2007 - 12:07 PM
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Posted 30 November 2007 - 03:13 PM
Thanks again, so much - I'll really try not to panic. I am really thankful I found this site.
Posted 30 November 2007 - 07:29 PM
I have had Raynaud's since I was in 9th grade. This was 10+ years prior to my diagnosis of Scleroderma. I had no problems until 2 years ago. That was when my fingers got really sore and I developed what I liked to call "calluses" on my fingertips. This made no sense in my mind, because my nails shouldn't have allowed calluses to form. I did some research in the internet and remembered a doctor years earlier mentioning CREST syndrome. I looked that up and realized that so many of those acronyms seemed to fit me. I immediately booked an appointment with my doctor who sent me to a Rheumatologist. Nonetheless, I always carry mittens and hot packs in my purse. I wear them whenever I get cold. My whole hands and feet and sometimes even my nose will turn purple/white when I am cold. At home I have an electric mattress pad, electric blanket, heating pad, warm socks and of course my mittens to ward off attacks. My doctor has also prescribed Revatio for me. This is a drug used to treat pulmonary hypertension, but it is also a vasodilator, which helps prevent attacks. I recommend asking if this prescription may help you. My insurance initially denied coverage for me, but my doctor wrote an letter and quoted studies that showed positive results from the use of this drug.
I hope this helped some. Good luck at your doctors. Also, start writing down your questions that you need answered. And it may be a good idea to bring someone with you to the appt to help interpret the information. If is often so overwhelming that you have trouble taking in and assimilating the information. Another person can help you with that.